Thank you for visiting my blog. This was supposed to be about Breast cancer, and later, my stage 4 breast cancer, but then it became about much more. Healthcare in general, the challenges of parenting disabled children, and also documented the writing of my book, The Special Parent's Handbook. Hopefully you'll find something here that will resonate in some way with you, and if you'd like to read more, particuarly about special needs parenting, please visit my website http://yvonnenewbold.com/

Thursday, 21 January 2016

Getting my Oomph Back

Today, for the first time in more weeks than I care to remember, I finally got some of my oomph back and it feels good. Since late November, it feels like I've been hibernating in some wilderness of exhaustion, and barely able to string a sentence together on the worst days. I've had moments when I've wondered if the cancer is closing in and about to draw the curtains on me, but now I can see it wasn't really anything to do with the cancer itself, it was a wake up call that I badly needed to listen to.

It started with my joints seizing up to the point whereby my legs simply wouldn't weight bear. For about three weeks getting from one room to another downstairs was a twenty minute marathon of pulling myself along from one piece of furniture to the next and then the wall. Leaving the house was nigh on impossible, and worse than that, I was so exhausted I didn't even care.

Twitter twittered on without me, emails came and remain largely unanswered, Christmas approached in a blur of mind-fog and I wasn't even able to do very much in the way of joined up thinking. I couldn't follow TV programmes much less keep going in a book, it was like I was in some sort of shut-down mode.

The walking bothered me though. Mobility has been an issue ever since I had chemotherapy three years ago, and it's also massively affected by the cocktail of cancer drugs I've been lumbered with. I've managed to get a pretty good perspective on it though, by counting my blessings and knowing that losing some ease of movement is actually a very small price to pay for being alive and loving it. However this was on a different scale, and yes, it bothered me a lot. Eventually I swallowed my pride, went on Amazon, did the research and bought myself a walking frame.

However I didn't have the guts to tell anybody. For days. Until it got to the point that i knew it would arrive and everyone would say "Hey, what's that?" and I was mortified about having to tell them. Well if I was mortified about telling the people I trust the most in the world, how was I ever going to be able to leave the house with my head held high as if I didn't give a stuff, and wander down to the shops with a jaunty little saunter, eh?

So I blurted it out over dinner one night, and the very next morning it arrived. The family was marvellous, and I needed them because I didn't have the strength to assemble it myself although I gave it a flipping good try. They were kind enough not to laugh out loud when we realised I'd put the wheels where the handles ought to have been - no wonder I couldn't get the damned thing to push properly on it's maiden voyage between the dining room and the kitchen. Once they took over and put everything where it's supposed to go, everyone rallied round to be as upbeat and cheerful as possible about my new little purchase. Have you ever seen anyone skateboard towards the front door on a walking frame? I have. Hilarious, and they did their best, but it still hurt like hell and I was still too proud to really let on how close I was to dissolving into wretched tears about the whole damned thing.

I've done it though. I've been out in public with it several times, and eventually I'm learning to develop yet another new perspective about it. I have a choice - either go out and be a part of the world with a helpful piece of metal on wheels, or become a housebound hermit. No brainer really, and one day I might even love it.

A few days before Christmas things started easing. I was able to get up and downstairs without crawling or bum-shuffling. Wow. It felt wonderful. I could nearly walk all the way to the kitchen from the front door without having to stop and catch my breath. Fantastic.

Things went from good to better for three whole days, long enough for me to do speed-shopping on Amazon for presents, and then I got ill all over again. A cold turned to a chest infection and lingered for for four full weeks, determined to put me in my place and make me come to some pretty life-changing conclusions. At least with the chest infection the brain fog cleared and I was able to think. I was even able to read and managed more books in less than a month than I got through in the whole of last year.

The thinking - now this is the exciting bit. Pennies started dropping, lightbulbs started lighting, and everything became loads clearer and much more possible - life wasn't over, but it has to be done a little bit differently to make sure I don't ever hit quite such a wall of exhaustion again.

So what have I learnt? Lot of things! Here are just some of them.

1. I've got secondary breast cancer and I'm not 22 anymore. So kidding myself that I can cope on 5 hours sleep or less a night isn't going to work long term. Some days over the past couple of months I've slept for over 15 hours in one stretch, because I needed to. I've even worked out that I'm more productive and can get much more done without having to stay up half the night to achieve it.

2. I've been doing too much, taking on too much, and I've worn myself into the ground. 2016 is the year I'm going to learn to say no sometimes.

3. I'm very clear about what I want to do to improve things for the next generation of vulnerable adults and children with special needs and their families. I'm much more focused, I'm working on a business plan, I'm redesigning my website, and I'm looking into starting up a Social Enterprise business to put things on a much more solid and settled basis. That way, one day there could be a team of people working with me towards the same purpose and I won't have to do everything all by myself. One day, if it goes well and I'm no longer around to do the work myself, other people could carry it on.

4. I need help now to cope with all the admin. So I'd like to introduce my first helper, my wonderful daughter, Francesca, who is going to take on one or two of the projects we want to achieve. We're working together for a few weeks to see how it goes, and so far I'm loving it and I hope she is too.

5. Shoes. I love them, but finding ones that fit now my feet have spread to the size of dinner plates is not easy, and nor do they make those sizes with high heels or in bright shiny colours. For the past two years I've only had two pairs of shoes, one for winter and one for summer, simply because I'm such a funny shoe size now. So I spent a whole afternoon on line, I found some specialist shoe shops, and I ordered and ordered and ordered. So exciting now to be the owner of 5 pairs of brand new shoes that all fit and don't pinch. OK so they all look just like the sort of convent-issue shoes that the nuns in The Sound of Music might have worn, but maybe I'll start a brand new fashion.

6. I'm a writer who is massively into social media and who may have a limited time left on this fabulous planet. So why have I been working on a limping old clunky PC that takes what seems like a lifetime and a half to open pages and crashes several times a day? I've been telling myself I can't afford anything better, but the truth is I can't afford not to. So I'm now the proud owner of a state-of-the-art laptop that whizzes from screen to screen in a nano-second. Consequently I'm buzzing along too and able to work much more efficiently and without the tearing-my-hair-out technological frustrations I've been coping with for the past two years.

7. The laptop is a shiny bright red. So are my new pair of Christmas furry slippers. They nearly make up for the nun's shoes. It's so last year if your slippers don't match your laptop, don't you think?

8. I've read and I've read and I've read. Among the novels that I needed to take me away from real life as respite, I've read business books and cancer books too. Radical Remission by Kelly A Turner has changed the way I look at everything. It's helped me start to think about implementing new ideas which just might increase my chances of staying alive a good deal longer. I'm already on borrowed time. When they discovered my cancer had spread my prognosis was to live for another 26 months. That date came and went over 6 months ago. With the help of this wonderful book, I'm now aiming to extend that original 26 months into another 26 years. Yay.

9. Whether I make it or not is immaterial. What's important is that I'm still here, I'm still alive and I'm still taking part in a hundred and one different things and living life to the full. Over the past few weeks I've had moments of doubt about whether or not the grim reaper was lurking. Well I'm pretty sure he's gone away for the time being at least. But I'm not going to make his job easy by twiddling my thumbs and waiting for him to come back. He'll have to wait for me. Ha!

10. Working and trying to change the world is all very good, but life is about having fun and spending time with people we care about too. Pacing myself and having some balance is vital, and I've been guilty of throwing myself headlong at everything over the past year or so - it's an easy trap to fall into when you think your days are numbered and you feel there's so much to do. I've still got goals I want to reach, but I'm now more likely to stop for a coffee on the way.

If you are one of the many people who have been waiting weeks for an email from me please accept my apologies, and I'll be in touch again very soon. I'm back now, and raring to go, but at an ever so slightly slower pace. You might even get to meet Francesca and my walking frame - I really must find a cheery new name for it.

18 comments:

Sorry to hear you have had a tough time Yvonne. For point 10 I am reminded of a story the wise Andy Bradley told me. His came home from work and his wife said to him "you are amazing at changing the lives of others and inspiring them. Do you think you should do this at home to?"

It has had a powerful effect on me. Look after yourself and those closest to you. The rest will then follow....

Thank you for reading the post, Damian, and particularly for taking the time to leave a lovely comment. I'm so pleased you and Andy know each other too - I'm think the world of Andy and his family, and their words of wisdom. We can so easily get to the point where we're beyond the point of empty and still trying to keep going, with nothing to give the people who we're actually doing it all for in the first place. You're so right - a solid base at home will carry us through everything else. Take care and thanks once again. Yvonne x

I am so glad that you are nurturing and spoiling yourself. You have been in my mind in recent weeks, I knew things were tough for you and sometimes we all need to step back from the blog machine and sort ourselves out. And, if I think I know you at all, you will be rocking and/or pimping that walking aid. I do hope we get to meet soon Aunty Yvonne x

Thank you Hayley, both for reading and for leaving such a supportive comment. What a fab idea - to pimp the walking frame!! Someone else suggested I customise the nun's shoes too ..... I'm so artsy-craftsy-clumsy that I may well have to meet up very soon if only to borrow both your girls and some glitter for the afternoon.....!!! x

Amazing Yvonne- honest, difficult and awe inspiring blog.To share your deepest thoughts and experiences shines a light on experience for others.My walking sticks have a name now - they are my "Nanny McPhee" sticks.You have so much to give to better us all as child and young people practitioners. Sian

Thank you Sian, your kind words mean a lot to me. "Nanny McPhee"? I love it! I need a name full of sassy attitude too for my frame, and I'm collecting some wonderful suggestions! Thank you for reading this post and for stopping to leave such a lovely comment. Take care, Yvonne xx

Oh, Yvonne, I just want to hug you right now. It's so hard to pace oneself isn't it? I'm glad you got the the walking frame to help you out when you need it. And I love your new red laptop and the slippers too. Just got a new laptop myself and I'm fumbling around trying to figure stuff out. Again, slow but steady, right? Wishing you all the best in 2016 and do take care of your sweet self. Enjoy all those coffee stops! xx

Thank you Nancy, I almost felt that heartfelt hug from you. Thank you for your lovely message here, and wishing you a long and happy relationship with your new laptop too! The hardest thing I'm finding is making time to do the boringly tedious and long-winded transfer of all the old files and photos from my previous system. Hope 2016 is a fab year for you too, and next time I stop for a coffee, I'll raise my cup in a toast to you! xxxx

Can't wait to introduce you to the team next week and I am so glad you didn't say 'No Thanks' to my request. Makes it even more special. You have an amazing strength and you words are inspiring and humbling at the same time.

What a lovely message!!! Thank you, but who are you?!! I know I know you, and I have a pretty good idea who you might be, but whether I ever find out or now I hope you know just how much I really appreciate all your encouragingly wonderful words xxxx

We are acquaintances, Yvonne. My brolly has taken me on many adventures...and I truly admire yours. Know that you have friends far and wide, who ride that wild magical merry-go-round with you, daily. And we all encourage you on your flight into the realms of the unknown.That is where truth is revealed and change happens.Much love,Mary Poppins xx

Thank you Marie, I do know what you mean, and I really appreciate all your kind words. Thanks too for including this post in your Weekly Roundup - that made my afternoon when I saw it, and I'll share it on FB tomorrow, with the link here now too so anyone browsing through comments can also enjoy the best cancerland blog posts of this week.

Barbara, thank you for reading my post and for the heartwarming things you've said about it, it's so kind of you. I'm sorry to hear that cancer has caught you too - sending my warmest best wishes that things are going well with treatment for you. Just hang on to hope, good things can still happen. Take care and thanks again. Yvonne xx

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About Me

I've passed my expected "sell by date" of the prognosis I was given when they found out my cancer had spread & loving every minute of it. Knowing that time may be short has been the catalyst to try & make the world a better place for the next generation of families like mine, those who have disabled children. I wrote a book, "The Special Parent's Handbook", telling it exactly how it is. It has become an Amazon #1 Best Seller, & due to the impact that the book has made I was named by the HSJ as being a "Top 50 Inspirational Women in Healthcare 2014". I'm now writing on healthcare topics, speaking at conferences & seminars & through my series of innovative workshops for parents and staff, people are developing better solutions for some of the issues we face. It's all about getting everyone to work together in partnership, to help every child reach their potential. But it's about a lot more than that too. Its about kindness, compassion, listening to each other, collaborating instead of competing, & putting people at the heart of all decisions. To find out more, please visit my website http://yvonnenewbold.com/ or email me on yvonne@yvonnnenewbold.com. Thank you.